CHRONIC FATIGUE SYNDROME: A TREATMENT GUIDE, 2nd Edition by Erica F. Verrillo
Copyright 2012 by Erica F. Verrillo. All rights reserved. No part of this book may be used or reproduced in any manner whatsoever without written permission except in the case of brief quotations, excerpts for critical articles, and reviews.
Disclaimers: This book is not intended as a substitute for medical care. The information presented herein is designed to help the reader make informed decisions about health-related matters. The author and publisher will not be
responsible or liable for actions taken as a result of the contents of the opinions and information expressed within this book. Please consult with a qualified clinician before embarking on any medical treatment, therapy or program.
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Preface to the second edition Preface to the first edition
Introduction: The Treatment Dilemma, How to Use This Book A Note to Our Readers
CHAPTER 1: WHAT IS CFS/ME? AN OVERVIEW
Introduction, Distinctive Features, Signs and Symptoms, CFS/ME Defined: A Multisystem Disorder, Subtypes and Stages
Historical Background: Epidemics, Outbreaks and Recent Developments Prognosis and Recovery
Diagnosis: Summaries of Case Definitions; Making a Diagnosis, Tests, Objective Measurements, Specific Tests, Hope for a Biomarker, Full Case Definitions: CDC Guidelines for the Evaluation and Study of CFS (1994) (“Fukuda”),
Canadian Criteria (2003), Myalgic Encephalomyelitis: International Consensus Criteria (2011), Oxford Criteria (1991)
In Search of a Cause: Viruses, Bacteria, Mold, Environmental Causes, Genetic Theories, Historical Lessons
CHAPTER 2: MECHANISMS AND THEORIES
Introduction: How Does CFS/ME Work? The Endocrine System
The Nervous System and Dr. Goldstein's Limbic Hypothesis Immune Dysfunction
Vascular System and Diastolic Dysfunction Digestive System
Oxidative Stress and Pall's NO/ONOO‾ Hypothesis Glutathione Depletion - Methylation Block Hypothesis Mitochondrial Failure
Cause and Effect: Putting it All Together PROTOCOLS
Introduction, Websites that list or compare protocols Bateman Protocol
Hunter-Hopkins Protocol Pall Protocol
CHAPTER 3: SYMPTOMS
Introduction: How to Assess and Monitor Symptoms
Allergies: Airborne Allergens: Pollen, Mold, Animal Dander, Fur and Feathers, Dust, Food
Chemical Sensitivities: Indoor Chemical Air Contaminants, Outdoor Chemical Air Contaminants, Drugs and Medications, Clothing and Personal Care Products Candida
Cardiac and Cardiovascular Symptoms/Dysautonomia: Blood Circulation;
Dysautonomia, Orthostatic Intolerance, POTS, NMH, Shortness of Breath/Air Hunger
Cognitive and Emotional Problems: Loss of Concentration, Short-Term Memory Impairment, Multitasking and Sequencing, Linguistic Reversals, Word Searching, Math Problems, Emotional Problems
Digestive Disturbances: Esophagus: Spasm, Difficulty Swallowing, Loss of Appetite, Reflux/Heartburn; Stomach: Nausea, Small Intestine: Permeable Intestine (Leaky Gut), SIBO, Large Intestine: IBS, Gas, Diarrhea, Constipation; Rectum/Prostalgia Fugax, Tenesmus; Gallbladder; Liver
Dizziness and Vertigo
Endocrine Disturbances: Thyroid; Adrenal Glands
Fatigue: Postexertional Fatigue; Lethargy; Agitated Exhaustion
Flu-Like Symptoms: Sore Throat, Tender Lymph Nodes, Fever and Chills, Sweats Gynecological Problems: Irregular Periods/Perimenopause/Early Menopause,
Osteoporosis, PMS, Endometriosis
Headaches: Migraine Headaches, Sinus Headaches, Tension Headaches Hearing Problems: Hyperacuity, Tinnitus, Pain, Itching, Hearing Loss Hypoglycemia
Joint Problems: Gelling, Pain Loss of Libido
Muscle Problems: Weakness (Paresis), Tremor, Loss of Coordination, Twitches Oral Problems: Gingivitis, Sensitive Teeth, Canker Sores, Temporomandibular
Joint Syndrome (TMJ), Taste
Pain: Carpal Tunnel Syndrome, Spasms, Fibromyalgia Secondary Infections: Viral Infections, Fungal Infections
Seizures and Seizure Activity: Absence Seizures (Petit Mal), Simple Partial Seizures, "Sensory Storms," Grand Mal Seizures
Skin, Hair, and Nail Problems: Pallor; Rashes; Dry, Peeling Skin; Acne,
Hypersensitivity, Spontaneous Bruising, Paresthesias, Loss of Fingerprints, Rosacea; Hair; Nails
Sleep Disorders: Insomnia or Difficulty Initiating and Maintaining Sleep, Phase Shifting, Hypersomnia, Light Sleep, Hypnagogic Sleep, Dysania, Myoclonus, Dreams and Nightmares, Night Sweats
Urinary Tract Problems: Cystitis, Interstitial Cystitis, Prostatitis
Vision and Eye Problems: Visual Processing Problems, Photophobia, Floaters and Spots, Tearing and Dry Eye, Sluggish Focus and Double and Blurred Vision, Tunnel Vision, Night Blindness, Depth-of-Field Loss, Nystagmus, Early Cataracts, Sjögren's Syndrome
Weight Loss or Gain: Weight Loss, Weight Gain TREATMENT OPTIONS
Treatment Options, Treatment tips, Useful Resources
CHAPTER 4: PHARMACEUTICALS AND PRESCRIPTION DRUGS Ampligen
Anticonvulsants: Neurontin (gabapentin), Gabitril (tiagabine) Lyrica (pregabalin) Antidepressant Drugs: doxepin, amitriptyline, nortriptyline, desipramine,
imipramine, trimipramine, clomipramine, fluoxetine, sertraline, paroxetine, citalopram, excitalopram, bupropion, phenalzine, tranylcypromine, trazadone, venlafaxine, duloxetine, mirtazapine
Antifungal Agents: Nystatin, Diflucan, Nizoral, Sporanox
Antihistamines: Benadryl (diphenhydramine), Claritin (loratadine), Allegra
(fexofenadine), Zyrtec (cetirizine), Chlor-Trimeton (chlorpheniramine maleate), Atarax and Vistaril (hydroxyzine), Dramamine (meclizine), DiVertigo
Antiviral Agents: acyclovir, famcyclovir, amantadine, valacyclovir, valganciclovir Artesunate
Benzodiazepines: clonazepam, diazepam, alprazolam
Beta Blockers: propanolol (Inderol), atenolol (Tenormin), labetalol (Normodyne), nebivolol (Bystolic)
Calcium Channel Blockers: Nicardipine, Nimodipine, Nifedipine, Verapamil Central Nervous System Stimulants: Ritalin, Dexedrine, Lonamin, Provigil,
Strattera Cytotec (misoprostol) Diamox (acetazolamide) Epogen (Procrit) Flexeril (cyclobenzaprine) Florinef (fludrocortisone) Gamma Globulin GcMAF Guaifenesin
H2 Blockers: Tagamet (cimetidine) and Zantac (ranitidine) Hormones: Growth Hormone, Testosterone, Thyroid Hormones Hydrocortisone
Hypnotics: Ambien, Lunesta, Rozerem, Xyrem Kutapressin (see: Nexavir)
Nexavir (formerly Kutapressin) Nitroglycerin
Pain Relievers: Aspirin, NSAIDs, Tylenol, Aleve, Ultram, Narcotics Pentoxifylline Plaquenil Pyridostigmine (Mestinon) Questran (cholestyramine) Rituximab Transfer Factor
CHAPTER 5: NUTRITIONAL SUPPLEMENTS AND BOTANICALS Introduction: Useful Resources
Alpha Ketoglutarate (AKG) Alpha Lipoic Acid
Amino Acids: Carnitine, Glutamine, Lysine, Taurine Antioxidants
Bioflavonoids: Grape seed extract, Pycnogenol, Quercetin Butyric Acid
CoQ10 (ubiquinone, ubiquinol) D-Ribose
Essential Fatty Acids: Fish Oil, Flaxseed Oil, Evening Primrose Oil, Borage Seed Oil
FOS (fructooligosaccharides) GABA (gamma aminobutyric acid) Galantamine
Glucosamine Sulfate Glutathione
Herbs: Aloe vera, Astragalus, Chamomile, Echinacea, Garlic, Ginger, Gingko, Ginseng, Goldenseal, Gotu kola, Kava, Licorice, Lomatium, Milk Thistle, St. John's Wort, Uva ursi, Valerian
Histame Inosine Inositol Malic Acid Melatonin
Mushroom extracts: LEM (shiitake), Maitake, Cordyceps NAC (N-acetylcysteine ) NADH (ENADA) Piracetam Probiotics Royal Jelly Sambucol
SAMe (S-Adenosyl methionine)
Vitamins: Vitamin A, Beta-Carotene, Vitamin B12, Vitamin B6, Vitamin B Complex, Vitamin C, Vitamin D, Vitamin E and Tocotrienols
Whey Products: Colostrom, Undenatured Whey, Probioplex
CHAPTER 6: ALTERNATIVE AND COMPLEMENTARY MEDICAL AND SUPPORTIVE THERAPIES Acupressure Acupuncture Aroma Therapy Bach Remedies Bed Rest Biofeedback Chelation Therapy Chiropractic
CBT (Cognitive Behavioral Therapy) Exercise; GET (Graded Exercise Therapy) Homeopathy
Massage: Craniosacral Massage, Lymphatic Drainage, Myofascial Release, Perrin Technique, Reflexology, Shiatsu
Meditation; Amygdala Retraining Program Pacing
TENS (transcutaneous electrical nerve stimulation) Visualization and Imagery
COPING AND MANAGEMENT STRATEGIES Introduction – Pacing Yourself
CHAPTER 7: Stress Reduction and Elimination
CHAPTER 8: Cleaning Up: Eliminating Toxins in the Home CHAPTER 9: Food and Diet
CHAPTER 10: Special Needs of Children With CFS/ME, Adolescents, Definition of ME/CFS for Children
APPENDICES A. RESOURCES
B. NATIONAL AND INTERNATIONAL ORGANIZATIONS C. CFS/ME CLINICS, CLINICIANS, AND LABORATORIES D. MAIL-ORDER SUPPLIERS
Preface to the Second Edition
When the first edition of Chronic Fatigue Syndrome: A Treatment Guide was completed Lauren and I were asked what we would do with the manuscript if a cure were found before the publication date. "Burn it!" we said. We weren't being naive. The late nineties were a heady time for CFS advocacy and support groups. We had a national organization, the CFIDS Association of America, which published a
monthly magazine with all the latest research and treatments. Osler's Web, Hillary Johnson's breathtaking account of the Incline Village outbreak and the subsequent CDC coverup, hit the bookstores in 1996. And a second national organization, the National CFIDS Foundation, was formed in 1997. Ampligen trials were underway, and the initial results were encouraging, to say the least. It seemed as if a cure was just around the corner.
Fifteen years later, the cure has not been found. Those of us who contracted CFS in the eighties are now entering our third decade of illness. Researchers are still attempting to discover the cause of CFS/ME, and, despite a proliferation of studies demonstrating the many immunological and neurological mechanisms of the illness, more than a few doctors still believe it's "all in their heads." Even the much publicized discovery of XMRV was met with a "let's wait and see" attitude by the old dogs who had seen too many tricks and suffered too many disappointments. And, in spite of years of evidence proving beyond any doubt that this is an illness that can completely disable, if not kill, the medical establishment still persists in calling it by the ill-deserved name of Chronic Fatigue Syndrome.
That is the bad news.
The good news is the Internet. More than anything else, the Internet has brought our world-wide community together. People with CFS/ME talk about their symptoms, their treatments, and their doctors openly and fully online. CFS/ME doctors post their protocols, surveys of thousands of patients are taken. The evaluation of various treatments is a source of nearly constant discussion,
reminding the world that we are still here, still experimenting, and still, against all odds, recovering.
It is that discussion which prompted this second edition. We have still relied on published accounts appearing in medical and scientific journals for the bulk of the information contained within its pages. But the inspiration for its expansion comes from public forums which show there is clearly a need for more accessible, more accurate, and better organized information about all aspects of CFS/ME. The purpose of this book is to provide that organization, serving as a filter for what is often an overwhelming amount of information.
I would like to thank Dr. Lucinda Bateman, Dr. Derek Enlander, Dr. Charles Lapp, Dr. Martin Pall, Dr. Jacob Teitelbaum, and Dr. Richard Van Konynenburg for their invaluable input. Any errors, of course, are my own.
Erica Verrillo August 2012
Preface to the First Edition
Throughout this book we have examined the practical problems surrounding chronic fatigue and immune dysfunction syndrome (CFIDS). Rather than delve into debates concerning theoretical and political issues, we have focused on the clinical aspects of CFS/ME. We have taken great pains to present material in an objective, unbiased fashion regardless of our personal preferences.
Compiling information about an illness as complex as CFIDS can be daunting. Despite the difficulties surrounding such a project, the task has been more than worthwhile. In assembling a book that attempts to answer primary treatment questions, we have not only responded to a basic need in the CFIDS community, but have satisfied our own quest for knowledge as well. It is this knowledge, combined with the firm belief that experience is the best teacher that has enabled us to overcome some of the limitations of the illness we both have. For us this book not only represents the sum total of over fifteen years of knowledge and experience, it is the book we wish we could have had when we first became ill.
We gratefully acknowledge the input of Dr. Charles Lapp, Dr. David Bell, and Dr. Thomas Steinbach, who reviewed this book for medical accuracy. Finally, any errors remaining are our own.
Erica F. Verrillo Lauren M. Gellman October 1997
INTRODUCTION: THE TREATMENT DILEMMA
“Healing is a matter of time, but it is also sometimes a matter of opportunity.” —HIPPOCRATES —
CFS/ME is one of those illnesses for which receiving a diagnosis can bring as much frustration as relief. All too often a person who has spent years searching for a diagnosis expects that identification of the illness will bring with it, if not a cure, at the very least an effective treatment plan. Unfortunately, most of us who have received the diagnosis have also been told that CFS/ME has “no known cause or cure,” a phrase that invariably creates enough hopelessness to offset any relief the diagnosis may have offered.
The lack of known cause or cure, while discouraging, certainly does not imply that an illness cannot be treated, or that those who suffer from it will not recover. Throughout the ages, physicians have successfully treated diseases on the basis of their knowledge of symptoms and human physiological responses rather than on test results. And because human physiology has not changed much over the past 40,000 years, treatment approaches, for the most part, have remained remarkably consistent. For example, the Chinese medical system, which relies heavily on nutrition and the use of herbs, was codified more than 5,000 years ago. Herbal remedies, their pharmaceutical derivatives, massage and manual manipulation techniques, nutritional therapy, and stress reduction methods (meditation, yoga) are treatments that have withstood the test of time, and still form the mainstay of medical systems throughout the world.
The premise of this book is that the absence of a cure does not in any way imply that there is no treatment for CFS/ME. To make the grounds for this position clear, consider the popular concept that an illness "attacks." Cure, in this conceptual framework, consists of killing the attacker. In CFS/ME, the attacker is unknown, unidentified, and perhaps not even a single factor; thus counterattack is impossible. The victim is left with only two choices: lie back and let nature take its course
(which in CFS/ME can be agonizing), or seek alternative points of view. The
alternative we suggest is to view CFS/ME as a form of systemic damage that must be gradually, methodically, and thoughtfully repaired. Or, to use an analogy, if CFS/ME is like falling into a hole, as some patients have observed, recovery is like climbing out of the hole, step by step, rung by rung.
The purpose of treatment is to provide rungs. Each treatment that relieves a symptom can serve to haul a person with CFS/ME one step farther out of the hole. And with every treatment that successfully accomplishes its purpose, the body becomes stronger and more footholds are available. People who have had CFS/ME for a long time are well aware that this approach can lead to significant
improvement, enough so that return to work or recommencement of a social life is possible. Statements like: "With B12 shots I had enough stamina to go on vacation with my family" are heard frequently enough to warrant attention. If each person
measures a treatment by what it can restore to his or her life, that standard provides a basis and framework for recovery.
With that analogy in mind, we have compiled a list of treatments, therapies, and techniques that have been successfully used by people with CFS/ME. Inclusion on this list does not constitute an endorsement. None of these treatments is
guaranteed. Realistically speaking, what works wonders for one person may not work at all for another. Nor are they cures. None has been shown to completely eradicate the disease. But many of these treatments may relieve the worst
symptoms or decrease the severity of the illness. For people who are unable to leave their beds, have lost their jobs, or would like to resume the semblance of a normal life, a 10%, 20%, or 30% improvement is not to be lightly dismissed. The key to determining which of these treatments will be effective is knowledge.
Understanding your illness— your symptoms, your responses, your ups and downs—is the greatest favor you can do for yourself and your doctor. Dr. Patricia Salvato, a CFS/ME specialist practicing in Houston, Texas, expresses this idea quite well: "Well-informed patients simply make for better partners in health-care, and, when knowledge is shared, everybody benefits; there is an unbelievable amount of healing in just the sharing of new knowledge" (Mass CFIDS Update, Summer 1996). HOW TO USE THIS BOOK:
This book is a reference guide – somewhat like a modified encyclopedia. It is structured to allow you to skip throughout its contents without any loss of context. With that in mind, there is a certain amount of redundancy built into the text, so that valuable information will not be missed.
The book is divided into four main parts. Part I is an overview of CFS/ME to help orient the reader. The most notable characteristics of the illness are presented, followed by a brief history of the illness, diagnosis, tests, and finally prognosis. An updated section concerning the possible causes of CFS/ME is presented at the end of Part I.
Part II deals with how CFS/ME affects the body. This is a guide to
understanding the body's reaction to CFS/ME and is your resource for devising appropriate treatment strategies.
The first section deals with mechanisms. Understanding the basic
mechanism of an illness is the key to devising any sort of treatment approach. For that reason, it is important to know what the illness actually does to the person who has it. The following section, Protocols, outlines protocols of prominent CFS/ME doctors and researchers based on their theories of the mechanisms of the illness.
The third section describes CFS/ME symptoms, one at a time, from the perspective of the patient. Following the description is an explanation of why the symptom occurs in CFS/ME. At the end of each symptom entry are treatment tips, recommendations for further reading, references, and resources for additional information. The "SEE" section at the end of each symptom entry provides cross-references to treatments and other relevant parts of the book.
Part III consists of a treatment dictionary, divided into three sections: 1) pharmaceuticals and prescription drugs, 2) nutritional supplements and botanicals, and 3) alternative and complementary medical and supportive therapies. It is
important to remember while reading these sections that we have not included every possible treatment for CFS/ME. We are not doctors and cannot speculate as to what might or what might not constitute an appropriate treatment for this illness. Instead we have made our selection through relying on documentation found in published literature written by medical researchers, doctors and clinicians, as well as by patients themselves. The short introductions provide guidelines each person should be aware of when using these treatments, as well as essential resources.
Part IV discusses some useful coping techniques and what are commonly referred to as "lifestyle adjustments." Although this discussion comes last, we do not mean to imply that learning to cope with CFS/ME is in any way less important than treating the illness. Coping and management strategies can sometimes determine the rate of recovery a person will make, so their importance can hardly be
overstated. The three areas discussed are stress (Chapter 7), the home environment (Chapter 8), and diet (Chapter 9).
Stress is one of the primary obstacles for people with CFS/ME, and some useful management tips are provided. Toxins in the home – the most important environment for people with a disabling illness – and how to keep your living area safe will be of special interest not only to people with CFS/ME, but to those with multiple chemical sensitivities (MCS), an illness in its own right and certainly a significant problem for a subset of patients with CFS/ME. The section on diet is meant to be a general guide. Making generalizations about diet is difficult when patients with CFS/ME have such varied food sensitivities. Nevertheless, the topic is important because diet can make an enormous difference in how a person with CFS/ME feels.
Chapter 10 of this book concerns children and adolescents with CFS/ME. Although children experience the same symptoms as adults with CFS/ME, their needs are fundamentally different. A child with CFS/ME cannot make treatment decisions independently, nor can a child defend him or herself against a medical or school establishment that may view symptoms as signs of “malingering.” This chapter provides some special tips for parents of children with CFS/ME, who must act as advocates as well as caretakers. Included in this chapter are the personal, and often heart-rending, stories of children and adolescents with CFS/ME. At the end of the chapter are resources that respond to the specific needs of children and adolescents.
The information found in this book was gathered from a broad range of sources: medical articles, PubMed abstracts, academic publications, books about CFS/ME and related illnesses, newspaper and journal articles, research reviews, personal accounts, interviews, survey results, blogs, and websites. Although we relied on published sources for specific information concerning the mechanisms and treatment options available to people with CFS/ME, unpublished sources such as letters, telephone conversations, interviews, questionnaires, and Internet discussion
groups were invaluable in assessing the effectiveness of specific treatments and therapies. The rich and varied experience of the CFS/ME community itself forms the ballast of the book, for this is, above all, a book that reflects our own efforts to find treatment for this baffling disease.
A Note to Our Readers . . .
Throughout this book we have used the term Chronic Fatigue
Syndrome/Myalgic Encephalomyelitis (CFS/ME) to refer to the illness that has been variously known as Chronic Fatigue Syndrome (CFS) and Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) in the United States and in Europe as Myalgic Encephalomyelitis (ME). We do so under duress. While the combination of CFS/ME (or ME/CFS as it is known in Europe) is currently in vogue among
researchers, it is unwieldy and adds to the confusion surrounding this illness. Historically, ME has been defined as a post-viral condition that results in
neurological impairment, and while CFS certainly shares many of ME's features, it is frequently contracted without a prodromic viral infection. It can also occur with an absence of pain (myalgia), which is one of the defining features of ME. Lumping the two conditions together does no good medically, and a great deal of harm
The ramifications of including “fatigue” as part of the name of an illness have been enormous. That single term has generated a spate of misconceptions and often outright dismissal of what should be regarded as a serious and debilitating illness. It has led to an inexcusable lack of funding for research, and an erosion of
diagnostic rigor that affects not just people with this illness, but people with any illness in which fatigue is a major presenting symptom (e.g., Parkinson's disease, cancer, multiple sclerosis, and numerous other chronic conditions). No other medical condition is named after a single symptom. In this regard, CFS – even when paired with ME – sets an unfortunate precedent.
For more than twenty years there has been widespread interest in changing the name of this illness to one that is less misleading. At this point, nearly anything that does not contain the “f” word would be acceptable. We encourage our readers to make their voices heard on this issue so that this illness can receive the appropriate recognition and attention that it deserves.
CHAPTER 1: WHAT IS CFS/ME? AN OVERVIEW
Distinctive Features, CFS/ME Defined: A Multisystem Disorder, Subtypes and Stages, Signs and Symptoms
CFS/ME is, without a doubt, one of the most complex, multifaceted,
enigmatic illnesses the medical world has encountered. World-renowned CFS/ME specialist, Dr. Paul Cheney, in an unintentional paraphrase of Sir William Osler, has remarked that if you can understand CFS/ME, you can understand any illness. To date CFS/ME has defied anyone to identify its cause, or find a cure. And even after 25 years, there is still considerable debate over how to formulate a good case definition. CFS/ME is hard to describe and even harder to diagnose because its symptoms span allergies to vertigo and can occur in every imaginable combination. Most confusing, however, is the range in severity of CFS/ME, which can manifest as a mere inconvenience to an utterly disabling disease. People with severe CFS/ME can be completely bedridden, unable to perform basic tasks without assistance, whereas those with milder illness may be able to work full time but feel nagged by a persistent feeling that their energy has waned, or their "get-up-and-go" has got up and went.
Unfortunately, no federal agency has taken the measures required to
determine the true prevalence of the illness. As a consequence, no one really knows how many people have CFS/ME. According to what few epidemiological studies there are, prevalence rates swing wildly from 2 per 100,000 to 2,800 per 100,000 (Taylor). Based on a population of roughly 300 million, this means that somewhere between 6,000 and 8.4 million U.S. citizens have the illness. The reason for this huge disparity lies in sampling and definition. Doctors' reports will show a low rate, simply because most doctors don't diagnose CFS/ME. Clinic sampling tends to produce a higher rate, because everyone who goes to a clinic is ill.
Random phone calls are more accurate than either doctors' reports or clinic sampling, but phone interviews are seldom lengthy. Three or four minutes are scarcely enough to diagnose an illness that often takes a physician well over an hour of detailed questioning and multiple tests. Add to that the concept that CFS/ME can be defined by six months of fatigue and the statistics become meaningless. Everybody is tired.
An important point concerning prevalence is that CFS/ME is not restricted to any particular group. It can strike anyone at any time. It affects people of all ages, from preschoolers to the elderly. CFS/ME strikes both sexes, though women
predominate (women are affected by all autoimmune diseases in higher proportions than men). Neither does CFS/ME confine itself to a particular income group.
Patients with CFS/ME range from wealthy celebrities to school custodians, from doctors to construction workers. Contrary to the media myth that CFS/ME
primarily attacks white, middle-class women, CFS/ME does not discriminate by race or ethnic origin. Results of a demographic survey conducted in San Francisco
indicated a significant rate of CFS/ME among African-American and Native American populations. The study also reported that the average yearly income of patients with CFS/ME is about $15,000. Although CFS/ME usually strikes
sporadically, affecting only one member of a family or work group, it can also occur in epidemics. Since the 1930s more than 60 CFS/ME epidemics have been recorded. At no time during these epidemics was there any indication that CFS/ME was a particularly selective disease.
The enormous variation in severity and symptoms of CFS/ME, combined with a paucity of information regarding the transmissibility, prevalence, and long-term consequences of the illness, has helped contribute to the many misconceptions about CFS/ME. These misconceptions, half-truths, and errors have not only led to a
certain complacency on the part of government agencies but have made it difficult for people who have the illness to recognize it in themselves, much less seek out appropriate treatment. Despite the confusion, it is possible to make some
generalizations about the salient characteristics of the illness, an understanding of which will ease the task of identifying CFS/ME in patients with various
"nonspecific" symptoms. DISTINCTIVE FEATURES
CFS/ME is often described as “the flu that never ends.” Indeed, in many cases, it is preceded by a viral infection that doesn't resolve, and which, over time produces myriad other perplexing symptoms. One of the most notable
characteristics of CFS/ME is that it often appears suddenly. Many patients with CFS/ME can give the precise date they first started experiencing symptoms. Often these patients describe the onset as "flu-like," with many symptoms typical of a viral infection. The sudden onset of the illness is what allows a diagnostician to distinguish CFS/ME from many of the ailments and conditions that CFS/ME can resemble, such as allergies, endocrine abnormalities, multiple sclerosis, and mood disorders, none of which develops from one day to the next.
To complicate matters for the diagnostician, and for the patient seeking a diagnosis, CFS/ME does not always come on suddenly after a flu-like illness. It can also develop with deceptive slowness, its symptoms emerging one by one until the patient's life is irrevocably changed. In these cases it may be difficult for the person experiencing the symptoms to recognize that anything is amiss until months or even years have passed, especially if that person conducts a busy, active life. In these cases there is a strong tendency to attribute the growing signs of illness to stress, overwork, or aging. It is now thought that close to half of CFS/ME cases can develop in just this manner. Needless to say, these are the hardest for a doctor to diagnose. The patient may go from doctor to doctor for years before a tentative diagnosis is reached.
The salient characteristic of CFS/ME is that symptoms wax and wane. This can help distinguish CFS/ME from progressive illnesses that may share similar symptoms, but that worsen steadily over time. Typically, someone who contracts CFS/ME will experience a period of pronounced illness for several months, followed
by shorter periods of remission, then a return of the illness. Most patients with CFS/ME refer to these as "good days" and "bad days” (keeping in mind that a "good day" for someone with severe CFS/ME may simply consist of getting out of bed).
Periods of remission and exacerbation can be entirely random, following no particular pattern, or can be cyclic, occurring at certain times of the year (fall and spring for many people). In women, they may be influenced by hormonal cycles. Sometimes, exacerbations of the illness can be attributed to a known cause, usually physical exertion, but also exposure to a toxin, stress, or injury. If the effects are short term, these exacerbations are usually referred to as “crashes” or “flares.”
When the exacerbation lasts for several weeks, or longer, it is a relapse. Relapses can occur at any stage of the illness, even after the patient has
experienced many years of functional recovery. Unlike short-term exacerbations, relapses may take an entirely different course from the initial illness. Relapses may also present with different symptoms (primarily autonomic and/or vascular).
SIGNS AND SYMPTOMS
The signs and symptoms of CFS/ME are almost too numerous to list and just as daunting to categorize. Dr. Katrina Berne, a clinical psychologist who contracted CFS/ME in 1984, has compiled a list of symptoms, along with their frequency in the CFS/ME population. These percentages are based upon information reported by Drs. Bell, Cheney, Fudenberg, Goldstein, Jessop, Komaroff, Peterson, and two surveys (Kansas City and Phoenix).*
General or Physical Symptoms:
Fatigue, often accompanied by nonrestorative sleep, generally worsened by
Irritable bowel syndrome (diarrhea, nausea, gas, abdominal pain): 50-90%
Chronic sore throat: 50-90%
Fevers/chills/sweats/feeling hot often: 60-95% Muscle and/or joint pain, neck pain: 65-95%
Bladder/prostate problems, frequent urination: 20-95% Low blood pressure: 86%
Recurrent illness and infections: 70-85%
Heat/cold intolerance: 75-80%
Painful and/or swollen lymph nodes: 50-80% Systemic yeast/fungal infections: 30-80% Fungal infection of skin and nails: 71% Weight gain: 50-70%
Increased/severe PMS: 70% Swelling, fluid retention: 55-70%
Shortness of breath: 30-70%
Subnormal body temperature: 65% Severe allergies: 40-60%
Sensitivities to medicines, inhalants, odors, and foods: 25-65% Difficulty swallowing: 55-60%
Heart palpitations: 40-60% Sinus pain: 56%
Rash or flushing of face: 35-45%
Chest pain: 40% Hair loss: 20-35%
Eye pain: 30%
Pressure at the base of the skull: 30% Weight loss: 20-30%
Tendency to bruise easily: 25% Vomiting: 20%
Other general symptoms reported: Endometriosis; dryness of mouth, eyes; pressure sensation behind eyes; frequent canker sores; periodontal disease; pain in teeth, loose teeth, and endodontal problems; cough; TMJ syndrome; Mitral valve prolapse; Carpal tunnel syndrome; Serious cardiac rhythm disturbances; Pyriform muscle syndrome, causing sciatica; Impotence; Thyroid inflammation; Hypoglycemia or hypoglycemia- like symptoms; Swelling of nasal passages
Neurological/Central Nervous System-related Symptoms:
Confusion; inability to think clearly: 75-100% Concentration/attention deficit: 70-100%
Sleep disorder/disturbance (insomnia, unrestorative sleep, unusual
Muscle weakness: 85-95%
Headache: 75-95% (daily headache: 50%)
Memory problems (especially short-term memory): 80-90% Photosensitivity: 65-90%
Disequilibrium, spatial disorientation, dizziness, vertigo: 60-90%
Spaceyness, light-headedness: 75-85%
Muscle twitching, involuntary movements: 55-80% Aphasia and/or dyscalculia: 75-80%
Alcohol intolerance: 45-75%
Seizure-like episodes: 70% (seizures: 2%)
Coordination problems/clumsiness: 60%
Paresthesias (numbness, tingling or other odd sensations in face and/or
Visual disturbance (scratchiness, blurring of vision, "floaters"): 45-55% Episodic hyperventilation: 40-45%
Fainting or blackouts: 40%
Strange taste in mouth (bitter, metallic): 25% Temporary paralysis after sleeping: 20% Earache: 20%
Other symptoms reported: decreased libido; hallucinations; alteration of
taste, smell, hearing; tinnitus Emotional/Psychological Symptoms:
Mood swings, excessive irritability, overreaction: 70-90% Depression: 65-90%
Personality change: 55-75% Panic attacks: 30-40%
Dr. Berne notes that these figures represent a range of percentages of reported symptoms in different studies. In most cases only one-third to one-half of those reporting individual symptoms indicated that they experienced the symptom at all times. In Dr. Berne’s survey of the Phoenix area group, for example, figures were compiled to indicate the average total number of symptoms experienced all of the time (11 symptoms) and the average total number of symptoms experienced by each patient some of the time (18.6 symptoms).
*From Running on Empty, Excerpted with permission from Hunter House Inc, Publishers. Copyright 1995 by Katrina Berne, PhD. Although this book is no longer available for sale, there is a revised edition from 2002 entitled Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses: The
Comprehensive Guide. This book can be ordered on amazon.com and through Hunter House (800) 266-5592, Fax (510) 865-4295, or visit their website at www.hunterhouse.com.
CFS/ME DEFINED: A MULTISYSTEM DISORDER
Ultimately, CFS/ME must be defined by what it does. Because CFS/ME affects every system in the body, it should be properly classed as a “multisystem” disorder. By definition, a multisystem disorder is any illness which affects several physiological systems at once or in tandem. For example, in diabetes, the nervous system, the cardiovascular system, vision, and hearing are all affected.
Autoimmune diseases, such as lupus and Hashimoto's disease, fall into this category as well, because the immune system interacts with both the nervous system and endocrine system. Due to this interaction, autoimmune diseases frequently affect all three systems.
In CFS/ME, there is ample research demonstrating dysregulations of the immune system, endocrine system, nervous system, digestive system, reproductive system, and cardiovascular system, with multiple symptoms occurring in each category. The frequency with which symptoms occur in all of these systems, as well as their severity, proves that the underlying mechanism is something not only pervasive, but common to most cells in the body. In the end, CFS/ME may very well prove to be the mother of all multisystem disorders. As Dr. Cheney puts it, “It is larger than any of us know.”
SUBTYPES AND STAGES
Increasingly, there is a trend among researchers to view CFS/ME not as a single entity, but as a heterogeneous illness, or perhaps as many illnesses. Through genetic and other markers, subtypes are being identified, which, over time, may become distinguishable as illnesses different from one another, with different causes, different prognoses, and different treatments.
While narrowing down parameters in order to facilitate the development of effective treatment is always a welcome development, there is a certain confusion that arises from these attempts to classify CFS/ME subtypes.
The first problem with identifying subtypes is that there isn't a consensus on the case definition of CFS/ME. At this point, anyone with a long-term
multi-symptom illness that isn't easily diagnosed as something else can fit into the model of CFS/ME. Moreover, people who satisfy one case definition may not satisfy
another. This problem is further compounded when researchers talk about “chronic fatigue” as if it were a clinical entity. Chronic fatigue is a symptom, not a diagnosis, and it is the presenting symptom of many illnesses ( e.g., post-polio syndrome, MS, anemia, Parkinson's). Should all of these illnesses be considered subtypes of
Chronic Fatigue Syndrome? It may seem far-fetched, but the trend of using CFS as an umbrella term for “fatiguing illnesses” is already apparent in the absorption of ME within the general framework of “chronic fatigue.”
The second problem is that every illness has subtypes. Depending on the genetic makeup of the host, even the common cold can manifest itself in a variety of ways. An autoimmune illness, such as lupus, can produce a staggering array of symptoms, of which some (or all) may manifest themselves in any given patient. Undoubtedly, each of these variations will correspond to a variation in sets of genes. Does this mean that each variant of lupus (or diabetes, or Sjögren's) should be treated as a separate illness? Given the enormous variation in severity, length, type of onset, and triggers, it would be a daunting task to determine subtypes in
CFS/ME patients based on symptoms alone, especially in the presence of several disparate sets of criteria.
Finally, a number of clinicians have observed that CFS/ME, like cancer, has stages, each one of which may manifest itself in a different clinical picture. The initial stage, acute onset, may appear symptomatically as a viral illness, with flu-like symptoms (sore throat, low fever, etc.) During this stage, RNase L and sed rate will be elevated. After this stage, the patient enters into what Dr. Cheney calls autointoxication. The body becomes overloaded, particularly the liver, with toxins that are produced by excess RNase L activity, and a second set of symptoms
emerges: pain, “brain fog,” weakness, gut problems. RNase L levels decline, as does sed rate, which is now very low. Finally, the body enters into a third stage in which the hypothalamus, which has now been affected by autointoxication, becomes dysregulated, affecting the autonomic nervous system. This is the stage that produces dysautonomia, POTS and other problems related to loss of homeostasis. Needless to say, gene expression will reflect changes in the stage of the illness, as well as triggers and initial susceptibility.
How then, do we define subtypes – by how the illness operates at various times during its development, by sets of symptoms, by triggers, by genes, or by its as yet unknown cause? In the absence of a clear understanding of all these
variables, the identification of subtypes will be a monumental and possibly fruitless task.
In spite of, or perhaps because of, these difficulties, it is apparent that there is a crying need to define what CFS/ME is clinically, to identify its cause, and to discover a biomarker. For without these, CFS/ME subtypes will never be identified, and, over time, CFS/ME will end up as “chronic fatigue” and, eventually, simply “fatigue.” This would do a great disservice to all those who have labored to unravel the mysteries of CFS/ME, as well as to those who have suffered from its
This is an excellent overview of CFS/ME: http://www.ei-resource.org/illness- information/environmental-illnesses/chronic-fatigue-syndrome-cfs-myalgic-encephalopathy-me/
Taylor, Renee R., Leonard A. Jason, Judith A. Richman, Susan R. Torres-Harding, Caroline King, and Sharon Song. “Epidemiology.” In Leonard A. Jason, Patricia A. Fennell and Renee Taylor, eds. Handbook of Chronic Fatigue Syndrome. Hoboken, New Jersey: John Wiley and Sons, 2003.
HISTORICAL BACKGROUND – EPIDEMICS, OUTBREAKS AND RECENT DEVELOPMENTS
One of the most perplexing questions surrounding CFS/ME is how it began. Like so many other questions about this illness, the answer remains elusive. Debate is ongoing among researchers as to whether CFS/ME is a recent phenomenon or a disease with a considerable pedigree. Some argue that CFS/ME has been around for several hundred years; others present compelling evidence that CFS/ME is a
relatively new disease, arising in the last few decades at best. Those who maintain that it has been with us for centuries point to accounts of other diseases with
similar symptoms, such as muscular rheumatism in the 1680s or neurasthenia, first described in the late nineteenth century. Proponents of this position maintain that CFS/ME, as it is currently described, is merely a new name for an old illness. In direct opposition to this viewpoint, many others believe that CFS/ME is a true twentieth- century disease, a product of the "cocktail effect" produced by an environment polluted by neurotoxins, new or mutated viruses, contaminated vaccines, and other factors.
The question of where the illness originated is as elusive as when. Outbreaks of CFS/ME-like diseases were reported in Northern Europe and the United States as early as the 1930s. The first documented epidemic outbreak of CFS/ME occurred in 1934 in Los Angeles County Hospital and affected 198 health care workers,
mainly doctors, nurses, and technicians. Because this outbreak followed on the heels of a poliomyelitis epidemic, it was initially diagnosed as polio. However, the diagnosis was revised when doctors noticed that, unlike polio, this new ailment did not cause paralysis or death. It also produced myriad symptoms: headache, easy fatigability (especially after exertion), loss of appetite, intestinal disturbances, sweating, chills, stiffness in the back and neck, weakness, pain, insomnia, impaired memory, and mood swings. The disease tended to strike suddenly, with an
incubation period of less than a week, although insidious onset over a few weeks was also observed, producing a set of symptoms that remained intense and variable over the first six months, then becoming chronic and relatively stable. Lacking evidence to point to a new disease, a U.S. Health Bulletin simply described the illness as "atypical polio." Dr. Alexander Gilliam, the epidemiologist who chronicled the outbreak, remarked, "If the disease were not poliomyelitis, the epidemic is equally extraordinary in presenting a clinical and epidemiological picture, which, so far, is without parallel."
A second major outbreak occurred in Iceland in 1948 and 1949. Like the Los Angeles County Hospital outbreak, this epidemic also followed on the heels of a polio epidemic. An important difference was that the epidemic was not restricted to health care professionals but spread to the general population. The majority of the more than 1000 persons affected by "Iceland disease," as it came to be called, lived in three rural towns. Investigators were at first perplexed by this new disease, thinking it to be a new form of polio. However, the symptom pattern did not match their expectations of polio. In all cases, those who came down with Iceland disease had muscle pain and tenderness, numbness, and twitching, but not paralysis. Doctors also noted an unusual and troublesome persistence of cognitive and emotional problems in the recovery phases. Significantly, none of those who contracted Iceland disease came down with polio when that illness swept through the region a few years later.
A series of outbreaks occurred in the 1950s. One of the best documented was the 1955 outbreak in London at the Royal Free Hospital. Like other outbreaks, the attack rate was unusually high: 2.8% in men and 10.4% in women. Dr. Melvin Ramsay, who was in charge of the infectious diseases unit at the hospital, had the presence of mind to thoroughly document the illness. In order of frequency, the symptoms were: headache, sore throat, malaise, lassitude, vertigo, pain in the limbs, and nausea. The presence of low fever, which occurred in 89%, and swollen glands in 79% of the patients, combined with an incubation period of less than a week, led him to draw the conclusion that the disease was highly infectious. The hospital was subsequently closed for two months. A year later, a similar outbreak occurred in the same hospital. Dr. Ramsay called the illness “myalgic
encephalomyelitis (ME)” which identified the primary mechanism of the illness as an inflammation in the nervous system (somewhat similar to polio).
Epidemic outbreaks also occurred in Adelaide, South Australia, from 1949 to 1951; in Kingston, New York, in 1951; in Coventry (England), Rockville, Maryland, and Denmark in 1953; in Germany, Alaska, and Liverpool in 1954; in Perth, Wales,
South Africa, and London in 1955; in Pittsfield, Massachusetts (after an ill serviceman returned home from England), Ridgefield, Connecticut, and Punta
Gorda, Florida, in 1956; in Greece and again in London in 1958; in a convent in New York State in 1961; and in a factory in Kentucky in 1964. Between 1964 and 1982, an additional thirteen epidemics of “myalgic encephalomyelitis” and
“neuromyasthenia” were reported from Dallas, Texas to Dunedin, New Zealand. The most significant outbreak in recent CFS/ME history occurred in Incline Village, Nevada in late 1984. This was the outbreak that propelled the illness into the public arena, and gave it a new name that CFS/ME patients would,
unfortunately, be stuck with for decades to come.
Incline Village is a small resort town located on picturesque Lake Tahoe. In the fall of 1984, two local physicians, Dr. Daniel Peterson and Dr. Paul Cheney, began to see patients who seemed to have an unusually severe and debilitating flu. What was particularly puzzling to the doctors was that these patients did not recover. Months after the initial onset of the illness, patients still reported severe symptoms, and, in many cases, there was no detectable improvement. As time went on, the doctors saw increasing numbers of patients with the same malady.
Sometimes these patients were seen in clusters. In one instance, the members of a girls’ basketball team became ill, in another, it was schoolteachers in the nearby town of Truckee, Nevada. By mid-1985 the number of patients with this mysterious malady had topped one hundred.
The doctors were stymied by the illness. They had not previously encountered a disease process that so quickly reduced active, energetic individuals to bedbound invalids, with no identifiable cause. The symptoms they observed were unusual in both severity and range: exhaustion, pain, sleep disturbance, cognitive disorder, and a plethora of nervous system problems. Convinced that this was an outbreak of a new disease, the doctors contacted the Centers for Disease Control and Prevention (CDC), the government agency responsible for monitoring and controlling
contagious diseases in the United States.
The CDC's response was to ignore the doctors. Not only did the CDC fail to adequately investigate the epidemic, it ultimately created an insurmountable obstacle for patients, subsequent researchers, and clinicians. Thereafter, in large part because of the CDC's casual treatment of the outbreak in Nevada, the illness became known as a figment of the overachieving young professional's imagination— the "yuppie flu," as it was dubbed by the press.
The dismissive attitude that characterized the government's response to the outbreak did little to help control the spread of the illness. Throughout the 1980s the number of patients with severe, unrelenting flu-like symptoms increased, prompting doctors to take notice. Dr. Carol Jessop in San Francisco noted that starting in the early 1980s patients began reporting a viral-like ailment that did not resolve over time. A Harvard University physician, Dr. Anthony Komaroff, first noticed patients with similar clinical symptoms in the late 1970s, but became even more attentive to the illness when he saw increasing numbers in his Boston practice in the early part of the next decade. During this time, Dr. Richard DuBois in
Atlanta, Dr. James Jones in Denver, Dr. Irena Brus (now deceased) in New York, and Dr. Herbert Tanner in Beverly Hills all observed an increase in patients with this unique clinical picture. For these physicians the illness was indeed striking, and they puzzled individually about what was making their formerly healthy patients so ill that they were forced to leave jobs and schools, and to abandon so many of the activities previously important to them.
In 1985 another epidemic was reported, this time in a small rural community in upstate New York. Dr. David Bell, a pediatrician working in Lyndonville, began seeing young patients with recurring flu-like symptoms, abdominal pain, dizziness, fatigue, headache, joint pain, and cognitive deficits. By 1987 more than 200 people, 44 of whom were children, had contracted the illness. Like Dr. Cheney and Dr. Peterson, Dr. Bell's attempts to draw attention to the outbreak met with little success. However, he continued in his search for an explanation and eventually joined with Dr. Peterson and Dr. Cheney to research the cause of this malady.
The persistence of a few doctors who refused to dismiss the suffering of their patients, combined with press coverage, however misleading, aroused public and professional interest in the illness. Medical journals such as the Annals of Internal Medicine began to publish articles that described a long-term, flu-like disease with notable neurological and immunological components. At first the illness was
attributed to the Epstein-Barr virus (EBV), which causes mononucleosis, because of the high titers of EBV antibodies in this group. At the time, EBV seemed to be a perfect candidate for a causative agent, because many of the symptoms the patients had were similar to those of “mono.” However, this theory was soon dismissed when it was shown that EBV antibody concentrations did not correspond to the severity of the illness, nor were high titers unique to patients with the illness. Over time, it was found that people with the mysterious ailment had high antibody liters to a number of viruses in the herpesvirus family: cytomegalovirus, Coxsackie virus, and human herpesvirus 6. Nevertheless, the theory that EBV caused the new illness caught on, and the disease became popularized as "chronic Epstein-Barr" or just "Epstein-Barr."
In the late 1980s, publicity surrounding the illness began to gain momentum. Hillary Johnson, a journalist who contracted the illness, wrote an award-winning series for Rolling Stone magazine called "Journey Into Fear: The Growing
Nightmare of Epstein-Barr Virus." The story attracted national attention. (Johnson later wrote Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic, a compelling exposé of CFS/ME history and politics.) In 1990 Newsweek ran a cover story on the illness, which was the bestselling issue of the year. Stories were aired on popular television programs such as 20/20. As a result, the CDC was flooded with calls from patients from all parts of the country who were desperately seeking information and advice. It seemed thousands more people had the illness than the agency had imagined.
From that point on, interest surged. Prodded into action by persistent patients and diligent doctors, in 1988 the CDC devised a case definition and gave the illness a name – Chronic Fatigue Syndrome (CFS). Though many clinicians and
patients considered the guidelines woefully inadequate and the name derisive, it did give physicians a uniform description and a place to begin for making a diagnosis. Patient groups were formed. The end of the decade saw the birth of the first
national organization, the National CFIDS Association, based in Charlotte, North Carolina. With a national organization came advocacy, representation at the national level, fund-raising for research, organized media campaigns, public awareness programs, and patient education. Local support groups sprang up all over the United States, providing information, assistance, and validation for
hundreds of thousands of patients. In April 1990, the first international symposium was held in Cambridge, England, drawing clinicians and researchers from all over the world.
It was a momentous event, providing doctors, epidemiologists, and medical investigators with the first opportunity to share their observations and knowledge about a disease that had puzzled observers for the better part of a century. Since that time, numerous international symposia have been held, with researchers gathering to present their latest research, share insights and begin fruitful
collaborations with universities, private organizations, and medical “think tanks.” Independent organizations have proven to be a boon to CFS/ME patients. Because government health agencies have dropped the ball on CFS/ME research (including diverting millions of dollars earmarked for CFS/ME research to other programs and redefining CFS/ME as a “woman's disease”), patient groups such as the CFIDS Association of America and the ME Associations of Canada and Great Britain have garnered considerable private support for CFS/ME research and put pressure on government agencies and organizations. These organizations have funded research, organized public events, and acted as steadfast advocates for patients.
Private individuals have also stepped in where government organizations have failed. In 2005 Annette and Harvey Whittemore joined with Dr. Peterson to found the Whittemore Peterson Institute for Neuro-Immune Disease (WPI). Like so many other people who have devoted their personal resources to finding a cure for CFS/ME, the Whittemores were motivated by having a family member (in this case, a daughter) with the illness. As additional support, the WPI garnered official
backing from the Nevada State Legislature, which unanimously approved the WPI as a joint project between the WPI and the University of Nevada School of Medicine. The mission of the WPI is to conduct basic research on the cause of CFS/ME and other illnesses characterized by a dysregulation of the nervous and immune systems (Gulf War Illness, fibromyalgia, autism, atypical MS, and post-Lyme disease). Their ultimate goal is to find a cure. The WPI made worldwide headlines in 2009 when it announced that it had discovered the elusive virus that was the cause of CFS/ME, the XMRV retrovirus. Although the WPI's claim has not been substantiated by the wider medical research community, the efforts of the WPI have catapulted CFS/ME into a new arena.
Recently, three research institutes have been formed to investigate CFS/ME. In July 2011, Dr. Peterson established his own non-profit research foundation, the
Simarron Research Foundation. In perhaps the largest international collaboration of its kind, he joined with Bond University's Public and Neuroimmunology Unit (Australia), Queensland Health (Australia), and Stanford University to investigate the cause and further the treatment of CFS/ME. In December of the same year, the collaboration was granted $831,000 to pursue its goals.
Also in December of 2011, renowned CFS/ME specialist, Dr. Nancy Klimas, announced that she was establishing the Institute for Neuro-Immune Medicine at Nova Southeastern University. The Institute will conduct cutting-edge research and treat patients suffering from CFS/ME/ME and Gulf War Illness (GWI). Dr. Klimas hopes that “by bringing together some of the best scientific minds in the world, the facility will act as both a think tank and a working institute for the research, and train new clinicians.”
This goal is also shared by Dr. Derek Enlander, who in another impressive international collaboration based at Mt. Sinai Hospital in New York, has joined with Dr. Kenny De Meirleir, Dr. David Bell, Dr. Eric Schadt and Dr. Miriam Merad to research the genetic, viral, and clinical aspects of CFS/ME.
While the historical questions of how, when, and where CFS/ME originated may be debatable, the question of its current status is not. Almost all reputable research institutions and clinicians agree that CFS/ME has become a serious public health problem. What is made clear from a historical review is that, over time, the incidence of epidemic outbreaks has been matched, if not superseded, by increasing numbers of sporadic cases.
Currently, most people contract CFS/ME individually, which, while as not as dramatic as an epidemic, can produce equally significant morbidity. The CDC estimates that CFS/ME has affected more than a million individuals in the United States, a conservative estimate in most clinicians' opinion. Independent prevalence studies have estimated more than double this number, with figures reaching into the millions for the United States alone. Although the definitive cause of CFS/ME remains as yet undiscovered, it is hoped that through the continuing involvement of patient groups and increased funding for both private and governmental research, some of the questions surrounding the cause of this elusive illness soon will be answered and a cure found.
CFS Untied: http://www.cfsuntied.com/history.html
Detailed historical information regarding CFS/ME outbreaks. National Alliance for Myalgic Encephalomyeltitis:
http://www.name-us.org/ResearchPages/ResEpidemic.htm#M.E._Epidemics Scroll down for a detailed list of 60 outbreaks.
Bond University: http://www.bond.edu.au/about-bond/news-and-events/news/BD3_019855
Mason Award Landmark Grant for CFS Research.
“Why Royal Free Outbreak was not hysteria.” Good review of early studies. http://freespace.virgin.net/david.axford/articl02.htm#recent research
“A Disease in Search of a Name: The History of CFS and the Efforts to Change Its Name.” Karen Lee Richards.
http://www.prohealth.com/library/showArticle.cfm?libid=12435 Excellent timeline of notable events in the history of CFS/ME. Acheson, E.D. “The Clinical Syndrome Variously Called Benign Myalgic
Encephalomyelitis, Iceland Disease and Epidemic Neuromyasthenia.” American Journal of Medicine, Vol. 26, Issue 4, Pages 569–595, Copyright (1959).
http://www.meresearch.org.uk/information/keypubs/Acheson_AmJMed.pdf This article is essential reading for those who wish to obtain a clear picture of early epidemics.
Dawson, J. “Royal Free disease: perplexity continues.” Br Med J (Clin Res Ed). 1987 February 7; 294(6568): 327–328.
Goudsmit, EM. “The Royal Free Epidemic of 1955: Was it really mass hysteria?” 1987. http://freespace.virgin.net/david.axford/articl02.htm#recent research This is an excellent article challenging the notion that the Royal Free epidemic was a case of mass hysteria.
Parish, Gordon J. “Early outbreaks of 'epidemic neuromyasthenia'” Postgraduate Medical Journal (November 1978) 54, 711-717
Ramsay, A. Melvin. “'Epidemic neuromyasthenia' 1955-1978.” Postgraduate Medical Journal (November 1978) 54, 718-721
PROGNOSIS AND RECOVERY
Most people who are diagnosed with CFS/ME want to know, first and
foremost, when they will recover. Will CFS/ME last a year? Two years? Ten years? Or is it a life sentence? Unfortunately, for people with CFS/ME, the answer to this question is not usually forthcoming. Doctors with little experience with the illness may tell their patients anything from: "Go home and rest and you'll be better in a few weeks" to "Nobody recovers from CFS/ME." Physicians with more experience, however, tend to be more circumspect. The reason for their caution is that there is simply too much variation from case to case and far too little epidemiological information to be able to predict outcomes.
CFS/ME is a notoriously unpredictable illness. Some people recover completely within one or two years and can return to their former lives. Others improve enough to return to work, but must make modifications of their lifestyles. The majority of those with chronic illness learn to plan every aspect of their lives within the parameters of symptoms that wax and wane. A few must adjust to long periods of illness, or "plateaus," with little or no improvement, and, at the far end of the spectrum, there are those who do not show improvement and may even decline over time.
Recovery times vary from a few months (although these short-term cases go largely unreported and therefore never make it into statistical tables) to decades. Statistics reported by physicians are highly individualized, with the more renowned CFS/ME specialists – who see the most severe cases – giving the longest recovery rates, and general and family practitioners the shortest. However, most physicians tell their patients that CFS/ME, generally speaking, is a lengthy proposition—a matter of years, not months. The prospect of a very long illness is dismal, which is why the diagnosis is often received with profoundly mixed feelings. The only bright spot in the picture is that recovery does not necessarily correlate with duration of illness. Dr. Dedra Buchwald, a physician in Seattle, concluded, after a five-year study of local patients with CFS/ME, that duration of the illness does not correlate with outcome.
Significant improvement and functional recovery are possible even after many years of illness. By functional recovery, we mean a return to normal life, with accommodations. While these patients may not return to lifestyles as active as those they enjoyed before becoming ill, they are able to work, engage in leisure activities, and fully participate in life. There are even documented cases of long-term sufferers who have recovered completely. One CFS/ME patient from North Carolina
experienced full recovery after 19 years of illness. Dean Anderson, in a personal account, says he did not even begin to see an improvement until five years had passed (CFIDS Chronicle, Winter 1996).
While there are few reliable long-term studies of CFS/ME patients, those which have been completed are encouraging. In 2007 Matthews and Komaroff published a study in which 234 CFS/ME patients were assessed for physical and mental impairment between 1991 and 2002. This study found that physical function tended to improve for many patients over time, especially for patients between the ages of 18 and 60, and for women. Physical function did not deteriorate with time, despite the fact that they were aging. No deterioration of mental function was noted.
Although a lack of deterioration may seem cold comfort for those who are significantly disabled by the illness, for most people with CFS/ME, especially those with severe cases, the possibility of "substantial" or even "partial" recovery is cause for celebration. The Komaroff study also addresses one of the primary concerns of those with CFS/ME, which is that simply having the illness will cause long-term degeneration.
Who recovers? It is difficult to say, but those who have viral onset seem to experience the highest rate of recovery. In a study by Masuda et al, CFS/ME patients with viral onset seemed to have the best prognosis. After two years, eight out of nine viral onset patients had returned to work. Of the nine patients with non-infectious onset, only three had returned to work. All patients received the same treatments.
The best outcomes, of course, are seen in children and in those with milder cases. In a 13-year follow-up study of 35 children with CFS/ME, 80% reported full
recovery. However, 20% of those children (7) were still chronically ill, a percentage that roughly parallels chronic, severe cases in the adult population (25%).
Those with early diagnoses and who seek appropriate treatment tend to improve more quickly. Dr. Lapp, Dr. Teitelbaum, Dr. Holtorf and Dr. De Meirleir all report that 80% or more of their patients see significant improvement over time, which is to be expected in a population of patients being aggressively treated. The fact that early diagnosis and treatment seem to correlate with recovery rate, at least in some cases, should be sufficient motivation for the newly ill to seek the proper specialist. However, even those who spend years searching for a diagnosis should not lose heart. Recognition and treatment any time during the illness can bring substantial improvement, if not full recovery.
It is the fervent desire of all people with CFS/ME and those who are close to them that a cure be found. Already far too many years have been lost and far too many plans and dreams abandoned by countless children and adults affected by this illness. While we are waiting, it is important to bear in mind that, above and beyond finding a cure, a number of variables can affect the outcome of CFS/ME. Each person is different. What each has in common, though, is the need for hope.
The purpose of this book is to provide a cause for hope; that is, information that may enable you to make choices to influence the course of your illness for the better. If you are a medical practitioner or caregiver, this book may help provide much needed information and insights from various sources. In any case, we hope this book will enable its readers to "hang in there" and not lose sight of the light at the end of the long CFS/ME tunnel.
Kenneth Casanova's story of illness and recovery:
http://www.masscfids.org/resource-library/7-coping/73-recovering-from-cfids Bell DS, Jordan K, Robinson M. “Thirteen-year follow-up of children and
adolescents with chronic fatigue syndrome.” Pediatrics. 2001 May;107(5):994-8. http://cfids-cab.org/cfs-inform/Prognosis/bell.etal01.pdf
Masuda, Akinori, Takashi Nakayama, Takao Yamanaka, Yasuyuki Koga, and
Chuwa Tei. “The Prognosis After Multidisciplinary Treatment for Patients With Postinfectious Chronic Fatigue Syndrome and Noninfectious Chronic Fatigue Syndrome.” Journal of Behavioral Medicine, Vol. 25, No. 5, October 2002. http://cfids-cab.org/cfs-inform/Prognosis/masuda.etal.02.pdf
Matthews, Rosalind M., Anthony L. Komaroff. “Changes in Functional Status in Chronic Fatigue Syndrome Over a Decade: Do Age and Gender Matter?” Journal of Chronic Fatigue Syndrome, Vol. 14(1) 2007.
DIAGNOSIS: CASE DEFINITIONS AND TESTS
Case definitions: Summaries: Fukuda, Canadian, Oxford, International Consensus; Objective Measurements, Specific Tests, Sources. Full Case Definitions: Fukuda, Canadian, Oxford, International Consensus.
CFS/ME is a distinct, recognizable entity that can be diagnosed relatively early in the course of the disease, providing the physician has some familiarity with the illness. Although the absence of a single test to confirm CFS/ME still makes it, in part, a diagnosis of exclusion, CFS/ME is by no means a "waste-basket
diagnosis." Experience is the main stumbling block that prevents many physicians from making the diagnosis. They simply can't interpret what they are seeing. CFS/ME physicians who have attended outbreaks of the illness, or have seen hundreds (perhaps thousands) of patients have little difficulty recognizing the specific markers, indicators, and signs of the illness.
The first step in making a diagnosis is to compare the patient's history and symptoms with the case definition. This is not as simple as it appears. There have been nine case definitions, of which four are in common use. The one your doctor chooses will be a reflection of how familiar he or she is with CFS/ME.
CASE DEFINITIONS: SUMMARIES CDC/Fukuda Criteria (1994)
The 1994 criteria were drafted by the CDC in conjunction with the International Chronic Fatigue Syndrome Study Group, an international
collaboration of 20 clinicians and researchers. Dr. Keiji Fukuda was first author. As a consequence the 1994 criteria are commonly referred to as the “Fukuda” criteria. In spite of more recent updates, this is the set of criteria most frequently used by researchers and by clinicians when making a diagnosis.
The basic features of the Fukuda criteria are a minimum of six months of persisting or relapsing fatigue not substantially alleviated by rest and not the result of ongoing exertion, and that produces significant reductions in occupational, social, or personal activities. In addition, four out of eight of the following symptoms must be present:
tender lymph nodes
joint pain without redness or swelling post-exertional malaise
headaches of a new or different type
impairment in short-term memory or concentration unrefreshing sleep
Those with any past or current diagnosis of a major depressive disorder, bipolar affective disorders, schizophrenia, delusional disorders, dementias, anorexia nervosa or bulimia are excluded.
As a diagnostic tool, the Fukuda criteria are fairly straightforward and uncomplicated, which is probably why this case definition is still in use. However, the very simplicity of the Fukuda definition, which includes no reference to severity or frequency of symptoms, has hindered its ability to accurately diagnose CFS/ME. According to a 2011 study led by Leonard Jason, the CDC “Fukuda” criteria only identified 79% of patients with CFS/ME, while the more complete Canadian